Tag: disability

I can’t believe you are 15. When you were born- even before- I couldn’t think past the first few years. I always pictured you as a little boy, never thinking about teenage or adult years.

So much focus in our world is on young children. It almost seems like moms stop being moms when kids reach a certain age but we know that’s not true. Kids need their moms at all ages.

But especially you. You still really need me.

It makes me happy and sad all at the same time. That’s called bittersweet and I think it describes life so well.

You know I thank God for you every single day. I tell you how much I love you and you see my eyes glisten with tears when you look at me with your gorgeous almond pools of blue.

I mostly cry because I’m overwhelmed with the joy that is you.

But I have a confession- I sometimes get a little sad when I think about what you might be doing. I used to let these thoughts consume me. Now I wonder if you wish things were different or if you miss doing certain things.

Sometimes I’m afraid to express any sadness or question anything will let all those who think you aren’t perfect just the way you are be justified in their thinking.

You were born perfect as much as your brothers and sister and as perfect as any other child.

You are unique and exquisite. Fearfully and wonderfully made.

But sometimes I go there- to the place of “what if”…

Take your birthday. You can’t tell me what you want for presents or what you want to do.

Birthdays are different for you. You don’t talk about what you want to do a year in advance. You don’t ask for a party or request your favorite meal or even have a say in what kind of cake you get.

Would you want to have a party, or just some friends over to hang out and play video games? Would you even like video games? Would you want to go to a movie? Out to dinner? You can’t tell me your favorite resturant. But I’d love to know.

Sometimes I picture you in the youth group. You would be raising money to go on a missions trip. You might even be going with your big brother.

I’d be “griping” about the Mother’s Day Bake Sale and how it’s not a relaxing Mother’s Day for me and we’d all laugh because it’s tradition and we would get in the kitchen all together and have fun.

Would you want to go to Verge Camp? I sometimes picture you sleeping on the bus and playing pranks and worshipping with thousands of teenagers and eating junk food and making silly faces at the iPhone pointed at you so I can see you on Facebook and know that you’re having a blast.

We would have had the “talk”. You may or may not be girl-crazy and you may or may not ever tell me about your crushes.

Instead…

I pack a pull-up in my purse (just in case), tie your shoes and look at the tag velcroed in the laces that reads: “I have autism. I am non-verbal.”

Your life is full of “special” conditions- special needs trusts and guradianships and IEP’s and medical issues and hundreds of things that complicate already difficult to navigate waters.

But in your 15 years, whether you know it or ever will realize it, you have changed my soul more than any typical teenager ever could. You have impacted lives without saying a word well beyond what most do in a lifetime.

Your smile is so genuine and pure, I know that you hold the secret of joy.

Contentment comes effortlessly and while I struggle against the worldly and unimportant, you are satisfied.

I feel lonely for you sometimes. You don’t have friends in the sense your brothers and sisters do. But I’m grateful that they let you hang out in the middle of them, and you laugh and put your hand on one of them to let them know, “Hey, I’m here. Thank you for letting me join in.”

Maybe if you could tell me if any of the things I wish for are your wishes. Maybe it’s my selfishness that wants these things for you that you care nothing about.

Once your Mamaw asked if I thought you knew you were different. I honestly didn’t know then.

But now- I think I know and I think you do.

Does it bother you and will I ever know?

But today, these questions can be left unanswered and I celebrate you, my precious young man who lives his beautiful life simply.

I am immensely proud of you. You, Joshua Neely, change attitudes and hearts. I pray God gives you the desires of yours because I know no one more genuine and deserving as you.

I don’t know if you can or will ever fully comprehend any of this. I guess I really don’t need to know if you do because God knows and He always knows best. What I’m sure of is that I am honored that He chose me to be your mom.

Trudging through social media, I am reminded time and again of the old adage about opinions and how everyone has one. For the shy and the outspoken, Facebook and the like give all who wish to climb upon it a platform- a level opportunity to express one’s opinion – and I find that opinions are as widely varied as the subject matter.

I also find that sometimes conversations are needed. It was evident as I scrolled through my Facebook news feed last Wednesday morning.

A&E premiered Born This Way, a reality show featuring young adults with Down syndrome. I anticipated its showing; I consider myself as a special-needs advocate, so I support anything that promotes awareness.

As I watch shows or movies, or read novels featuring those with special-needs, I feel this on-edge anxiousness, waiting for some derogatory comment or inaccurate statement. In conversations over the years, I have learned to wait for something hurtful to be said.

I believed Born this Way would portray Down syndrome in a positive light, so I went in with no trepidation. I knew my friends within the DS community would be talking about it but I was not prepared for the discussions that would follow nor did I think my own questions would become a catalyst for such conversations.

Fellow parents of children with Down syndrome asked if the show was truly representative. Opinions varied, naturally. Posts and comments from moms whose children are more like my Josh were not being able to watch because they said their children will never to be like these young people.

Others with younger children were encouraged. They felt their children could grow to be like these young people and nothing could stop them from reaching their full potential.

Small white boxes held very different words. Hopeful parents lovingly compared their children’s progress and accomplishments, thinking optimistically about their future. Others anguished over multiple diagnoses, things their children still haven’t done and might not ever.

My own Facebook post initiated a discussion between moms that have been on my journey with me since Josh was a baby. We met at our local Down syndrome association and have remained friends. And the opinions of the show were as varied as our children’s abilities, but not necessarily because of them.

I remember back to Josh’s diagnosis. I craved encouragement. I sought out support. I wanted others to know that Down syndrome was not the end of the world. I even worked on a pamphlet of information for new parents that presented Down syndrome in a more positive light.

I too thought nothing would limit him. With intervention and therapy, nothing would be out of our realm of possibility for him to reach his full potential.

When I read about the show, someone commented that it should be shown an OB offices when a Down syndrome diagnosis is given.

Maybe.

Or- maybe not?

Many times the lines become blurred between expectation and reality. Sometimes those lines are so distinct and bold that reality is a slap in the face. Our own reality can be far from the reality on TV and certainly from “reality TV”. Even in the Down syndrome community.

Last year I wrote a blog post called “A Different Kind of Wonderful” and it was shared on another blog, title rewritten as “A Different Kind of Beautiful”.

However, my original idea was actually, “A Different Kind of Down Syndrome.” But when I mentioned that term in a comment, a fellow mother of a child with DS told me this was divisive.

So I changed it. Divisive is the last thing I would ever want to be within the community that needs to be bound together in order to support each other and advocate for our children.

But I am finding that there is division.

A friend expressed that she is afraid to tell of her son’s accomplishments. She finds herself apologizing that her child is doing well when others struggle so greatly.

There are moms like me whose children function at a much lower level and have additional diagnoses. We feel hurt and cheated that our kids “aren’t there “and may never be.

The young people on Born This Way are all – pardon the term, because I know many don’t care for it – high-functioning. But even the father of the young man with Mosaic Down syndrome himself said his son was higher-functioning.

And as I watched, I mentally pictured a collective eye-roll among many of my friends who can’t relate. I confess, I’ve rolled my eyes. I’ve thought, “If he just had Down syndrome,” or” If only he could talk.”

My heart sank as I read comments of friends and their friends on Facebook Wednesday morning. Many cried as they watched. Others won’t watch because they knew it would be too painful.

I know that pain. I quit attending Down syndrome association meetings and Buddy Walks after Josh’s ability to participate in the activities ceased. As autism became part of our reality, watching his peers pass him by developmentally sent me into a pit that took me years to climb out of.

Some days I still claw my way up from that dark place where I could only see through disability-colored lenses. The place where I didn’t think other moms “got it” because their kids could talk and sing in circle time and went to the bathroom and held a pencil and wrote and drew and read books and sat still at a table without turning it over.

After all, their kid had “just Down syndrome.”

I still get the cheated feeling.

Yesterday, my youngest son was in a Christmas program at our church. Before I had children, I used to dream of my kids being in precious pageants and watching them play on sports teams and dancing on a stage.

I’ve gotten to watch three.

But not Joshua. Never him on the church platform. Never him singing, filing in with the others and me seeing his face on the big screen as the camera pans to each child.

While some children with Down syndrome can, Josh cannot.

I know what it’s like to be smile with joy for my other children through tears about another.

I felt their pain and anger – anger about a show that is to represent Down syndrome, yet seems to only highlight the brightest and the best. Resenting the fact it doesn’t accurately paint the broader and wider picture of what Down syndrome looks like in many lives.

But I have to say I did not feel that pain or anger as I watched. I don’t know if I somehow detached myself or if it’s just where I am in my own in my journey.

Many days have been spent with me on my face before my God and Him showing me that my path is my own and not anyone else’s.

And that He chose my son for me.

As I quit comparing him to others, and only to him, was I able to see him for whom he is and he is not the sum of his limitations, nor his accomplishments.

In turn, it has made me be more open to those of all abilities and simple celebrate people. I write and tell our story because I want people to know that while having a child with special-needs is life-altering, it is not a tragedy.

Will this show help change the perception of Down syndrome? Can it accurately do so if it doesn’t represent the community as a whole? Do we as parents want the most positive or the most realistic picture presented of living with DS?

These are questions I am not sure how to answer, because if I’m honest, my feelings are fickle and can change at a whim. I don’t always know what I feel about Josh’s disability. Some days it’s no big deal. Other days it is all-consuming.

I just know what I feel about him. And that absolutely nothing will change the depth of love I have for that precious soul.

Will I watch tomorrow night? Most likely. Simply because I want to and because I can now. I may not have been able to before. And that would have been okay.

A few tears may fall from my eyes for the young woman who cannot bear to hear the words “Down syndrome” because it makes her feel uncomfortable. Or be angry toward her mother because for taking her 20 years to accept her.

I may laugh because some are witty and I may even have to shoo my youngest out of the room if they begin talking about more adult subject manner.

I may cry because certain days it hits me harder and just because it didn’t last week doesn’t mean it won’t.

I really don’t have time to write today. But it’s one of the days that if I don’t, I may explode, the pieces of me, of my brokenness scattered for all to see.

And though writing is like breathing and sometimes I just have to, I hesitate to be real. To write real.

So I hold my breath. Because I never want to invite my friends to a pity-party with me as guest of honor sitting on my pity-pot like the queen of I’ve-Got-It-Bad-Land, sobbing as my tiara gets ripped of my head from my steroid-raging, non-verbal child while my subjects scurry to get towels to wipe the plethora of mess I’m privileged to clean numerous times daily.

Privileged? I changed that three times before I actually left it because it kept coming back and I could not shake it no matter how I tried. So, I must be. God has given me this life and I am to be thankful in all things. Not for all things, but in them.

And while being a wife and mother is my heart’s desire, some days, I sense that it’s not enough.

As a young woman, I felt that need would be satisfied with a career. As I’ve gotten older and dedicated my life to the Lord, I admit I can envy those in ministry, those preaching inspiring messages and leading magnificent Bible studies. I want to tell my story on a stage, be given a platform for what God has called me to do through speaking and writing. I want to go on mission’s trips and even envying my own children who can and the fact they have their whole lives ahead to serve God. I wasted so much time with foolishness.

Yet I know comparison produces nothing and I must walk my walk and do what I am called to do right now.

But sometimes, my legs get cramped, my feet become calloused and my body weary and sore. My arms bear the physical marks of a frustrated and ill child.

I cry to God, “Do you see this??”

“Do you see what I am doing?”

“Do you see me?”

No one sees.

I am invisible.

My other children bear the brunt and carry my hurt. It’s unfair to them, but I know no way around it.

I looked at my oldest son as he helped me one day. I just looked at him and said, “It’s a different life,” and he nodded. He often carries a load I feel unfair but am so thankful for his heart that is so soft, yet must be so burdened. But he never complains.

But I do at times. I complain when I shouldn’t because others are facing worse. I complain that others complain about things that seem insignificant.

I am a hypocrite when I complain. I have much to be grateful for and the greatest at this very moment is that God’s mercies are new every day.

Every minute.

When I am at the end of my rope, He grabs the other end and pulls me to Him.

He wipes my face and bottles my tears. He does not judge me for them. He knows my heart and feels my hurt and sees my thankfulness even as I shake my fist at Him.

This fell out of my Bible the other morning. One of my favorite pictures of my boy. One that just seems to capture all that he is.

A few years ago, Joshua had surgery to have impacted ear wax extracted, ear tubes inserted as well as having his tonsils and adenoids removed.

This was the first time my husband stayed with him overnight at the hospital. We decided it best that he stay, since Josh had been going through behavior issues and had become increasingly harder for me to handle. Looking back, I realize I had never considered when he was an infant anything long-term. I blocked any frightening future and only considered the right-then.

My quiet time with the Lord the next morning consisted of daily Bible reading. Determined to read the Bible in a year, I followed the plan, often falling behind.

But that day – in black and white was my word from God.

I wrote it on a post-it note and put it on the back of the picture.

Because Joshua’s ears were just cleaned and cleared and opened by little tubes, now his tongue would be loose and he would speak plainly.

So specific in what I had always hoped for.

When Joshua was little, I thought we could have enough speech therapy so he wouldn’t sound like he had Down syndrome. I used to think people with DS sounded “deaf” and my pride took over as I told myself that my child would sound “normal.”

I shudder as I type this.

If I read this from someone else I would likely be angry and offended because my perspective has changed so greatly. I also how shallow and selfish I can be.

But confession is cleansing and I confess I how prideful and arrogant I’ve been.

Pride is a dangerous thing. God opposes the proud. I am so un- proud of my pride and ashamed of my entitlement.

I’ve laid bare, pride stripped and feeling forgotten. I no longer care about plain. I just want words. And feel like that is selfish too.

I’ve heard that words aren’t always needed and I have myself said that Joshua has changed people without ever saying one.

Some say this is how God intends for him to be because this is how He made him.

So the LORD said to him, “Who has made man’s mouth? Or who makes the mute, the deaf, the seeing, or the blind? Have not I, the LORD? (Exodus 4:11)

I have been told I should be grateful in all that he can do. He has made amazing strides and has given us glimpses into things he knows that we never thought he did.

But Joshua does things that we don’t understand and he can’t make us understand. Some of them are potential harmful to himself and to us. Right this very day we have a doctor’s appointment to seek answers for an issue that has been going on way too long and is taking its toll on him and our family.

Just two words would give us a starting point. “Josh hurt,” or “Josh sick.”

Or, “Me sad.”

Actually one word would suffice. “Mad”.

Anything to know what he is feeling and why he does the unexplainable.

He has therapy to lessen his frustration by increasing his communication and he has made great strides. Many times, we know exactly what he wants.

The other times..

I know – sometimes words are not needed.

But sometimes I’m selfish.

Some parents of non-verbal kids have said they have a secret language. I get that. I can “read” Joshua pretty well and he can communicate his basic needs of hunger or thirst by taking our hand and pulling or simply grabbing what he wants.

But there is something about words.

As a writer, I love words- their sounds and the way they paint a picture in one’s imagination that is so intimate to the one reading. Or listening.

When I talk to people with Down syndrome and am both amazed and envious.

For years I’ve ached to hear, “I love you Mommy.” I waited to hear his cute phrases and word mix-ups and all those funny things that I have written down from my other children.

Joshua’s page is blank.

My mama’s heart still longs to hear his voice, though now it is more of a man’s than a boy’s. And that leaves me feeling a bit cheated.

But really, I want it more for him than for me, so that he can express himself in more than grunts and limited signs.

I remember a friend years ago describing a special-needs girl, saying that she couldn’t talk and made “retarded sounds.”

I know the sound. I live with that sound. It resonates through the rooms and blends in the walls.

I’ve been asked if it gets on my nerves and if I’m honest, I would say yes, sometimes.

But I am afraid to be honest because the sound-maker was almost taken from me. The sound means that he is here with me and my gratitude at God’s grace leaves me with a sense that I shouldn’t complain.

But my humanness longs for words he can’t form no matter how hard he tries. My soul cries silently while I smile at him as he pushes out a sound that makes no sense.

I can’t lean to my own understanding because I don’t know how or even when autism took over and stole his voice.

And the point in which I no longer cared that he might sound as if he had Down syndrome.

It is no longer the enemy.

But I’m broken and helpless over his frustration.

I hear mommies say to young children, “Use your words,” and hope they realize how blessed they are to say that.

I listen to animated and greatly detailed stories from my youngest with eagerness because I don’t take for granted that he is able to express himself so brilliantly.

I am a talker and a listener and love teenagers in the kitchen telling stories and laughing and often watch Josh take it all in and wonder if he knows he’s missing out.

Even as I type, I hear the sounds of silent. The noises of the non-verbal.

In a conversation with my mother-in-law, I mentioned that Josh listens to this counting song over and over and that if he could talk, I bet he could count.

I bet he can read, as he recognizes words on his movies and can “match” them to their cases or knows if that movie is playing.

So could he read? Isn’t reading the recognition of letters, really? Letters arranged so that they take on meaning in their form. But he can’t “read” because he can’t speak.

So why can’t he speak?

She asked if he had speech therapy. yes, but only to the extent of other forms of communication. One can’t work on speech that isn’t there.

And as we talked, I started saying words I had never thought through, yet seemed to make perfect sense – to me, at least.

Signs with Joshua must first be done hand-over-hand, as with most everything we introduce to him. He generally does not imitate. Seemingly endless repetition leads to his mastering the task and eventually, he learns a sign will get him what he wants.

Neurotypical children learn imitation quickly. As a baby learns to talk, he babbles and soon imitates what he hears – words. A parent tells the child to say a word, and eventually will, forming vocabulary.

I realize there is really no way to “show” Joshua how to talk.

He makes noise, so his voice “works” but he cannot form words.

I don’t know why he doesn’t imitate sounds – is it because of cognitive delays, or autism or because he doesn’t know how to form the words. I can’t jump in his throat and “hand-over-hand” a word physically like I can for signs or tasks.

And as I explained this, she merely said, “That is a shame.” And I guess it is, because I cannot find anyone who knows how to make this happen and I don’t either.

But instead of wondering why, or asking if I caused this or even what can I do, I look to Jesus, Who Himself said, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.”

God isn’t finished with Joshua. Or me. Or any of us.

Through Joshua, I’ve learned to not for granted things that come so easy for most of us. I have learned to rejoice in the simple and am in awe of the mundane because it is difficult for many.

The works of God are displayed in him whether he talks or not. But I don’t think He wants me to stop asking. We are to seek and we are to pray and we are to believe.

I don’t know you. But I know you just found out your baby has Down syndrome.

I don’t know if, while gazing into your newborn’s almond-shaped eyes, you were told your precious baby has an extra chromosome.

I don’t know if you are still carrying your blessing beneath your heart and are waiting to hold the wee bundle that isn’t exactly going to be born the way you expected.

I don’t know you.

But I am you. I am you almost 14 years ago as I watched my tiny son’s face emerge on ultrasound while the doctor echoed words that wrecked me.

Feeling utterly helpless and shattered, all I heard was a diagnosis of doom and all I felt was fear. Anger. Betrayal by the very God Who I prayed to for it not to be. Inconsolable and overwhelmed.

I have a confession – I still feel some of these at times- when the days drag long, the challenges loom large, and the future feels uncertain.

But most times, I am overwhelmed with gratitude instead – for being given for such a gift, to be entrusted with such a beautiful soul whose love knows no conditions and whose smile makes my heart nearly burst.

I don’t know you, but like you, have been entrusted with one who is fearfully and wonderfully made, exquisite and unique.

I don’t know you. But I know you will love your child with a fierceness you never thought possible. I know you will be a mighty momma who fights and you will be able to do this.

I don’t know you, but we are connected, linked by an extra chromosome and placed on a path that only those who walk it understand. Don’t rush, because the pace may be a little slower and at times and it may be frustrating. But it makes us stop and linger and enjoy the moments that slip like sand through our fingers far too fast.

Your journey waits for you to embrace.

And though I don’t know you, I do. And you will walk it with grace and love.

I just came across an article in a magazine about raising a disabled child. While I am thoroughly immersed in the special-needs world, I am drawn to articles in publications of a more typical nature.

Maybe I’m drawn because I am so aware of how the normal in this world often forgets about those deemed different.

The article caught my eye specifically as it highlighted a child with the same diagnosis as a close friend of mine’s son. While rarer than Down syndrome or autism, it often “looks “similar. And yet still different.

Like disability itself.

The scope of disability is broad. The word scope itself is contradictory to me, because it means “extent”, but my mind sees a telescope. Narrow, but enabling us to see an expansive view of things far away and out of our normal field of vision.

Disability is often like this. For those of us who live it daily, whether physical, intellectual or the many and varied combinations of both, our world can seem very small and closed as we operate with tunnel-vision.

My own experiences have often left me feeling alone and isolated.

Left wondering if anyone except me and those who live as I do really care about the seemingly small, yet realistically broad population affected by disability.

Social activities, clubs, groups and even churches are geared to the typically-developed. While many strides have been made to accommodate the disabled, there remains the unspoken sense that things just don’t apply my special-needs child.

I parent him differently. Time and again I have heard to treat him like my others and have the same expectations, but the reality is – well, unrealistic.

How can I explain right and wrong to a child who often does not understand a word I say?

And if he does, how do I know he does? He can’t tell me. I can only assume and hope.

I never really know how much he knows. Only by extreme repetition and extensive practice is a task accomplished, but I really never know if he gets it, or if it is just rote habit.

The physical, mental and emotional exhaustion can be overwhelming. For me, it’s the constant and active stage of pre-talking toddlerhood, encased in an 80-pound 12-year old. There is no indication or prediction of when or even if the next stage will come.

Throw in puberty changes and up goes the ante.

And that’s just the now. The stress of planning for the future overwhelms me and while I lay it before the Lord, I feel irresponsible if I simply don’t worry.

Recently, my son accidentally got locked in our van. Fortunately, it was running with the AC on. But as I motioned repeatedly for him to unlock the door: “Come on, right here,” as I banged on the place the lock would so simply slide, he just looked at me and smiled.

I ordered a tag for his shoe with a safety alert blaring “I have autism and am non-verbal. “ Because running or bolting is a concern.

My typically-developed toddler once ran from me in a parking lot and after discipline never did again.

But again-it’s different.

I long to hear: “I love you Mommy”. And add cute sayings for my list. My other children have many.

But one has only a name.

I know that words are not always necessary.

But the want in me aches to hear a spoken phrase.

And my self-centeredness makes me ashamed.

I read a comment recently from a mother who lost her baby who would have been severely disabled if he had lived. She said people told her it was for the best.

And she said she would see parents of disabled children and think how lucky they are.

I am blessed beyond measure to be his mother. I am privileged and unworthy.

My reality is the constant check of wanting more for my son and feeling guilty for doing so.

The constant element that permeates my life is only occasionally smattered in a magazine that talks of usual life. My constant different mixed with my everyday normal calling of wife and mother.

It’s where my callings meet – of those I chose and those He chose.

A ministry given by the same grace by which He sustains me in my weakness.

He carries me through what He’s called me to do.

“He who calls you is faithful, who also will do it.”

I often hear, “I don’t know how you do it.” I do not think any of us really know how we do it, except that we just do because we have to. And I don’t know how those fighting harder battles do it.

But we do because we are called. Chosen.

Each of us is chosen, by Him, for Him, to do His work and share His heart.

And whether the world ever fully accepts or includes or even mentions those He has chosen me to speak for, I will not stop.

My girl has been on three mission’s trips. One of my favorite times is when she gets home, after she has slept off the jet lag and weary fog of travel has lifted enough to sit and have her “tell me all about it.”

The last was Honduras. Something about this place tugs at the hearts of those who visit and beckons back. My brother goes often with his church and mine sends various groups to minister frequently. Missionary friends living there send updates and pictures of a place I have only heard of.

Maybe this place I have never been draws me so because I know of a hospital and an orphanage there. Places that house the vulnerable and hurting. Places I haven’t been yet the kind of places where my heart lives.

My daughter and her team went to do unto Jesus as they visited the sick, the lonely, the estranged and the forgotten.

They prayed over children in hospitals beds where heat hung thick from no air-conditioning and for whom modern medical care had not yet made its way.

The next day the team went to an orphanage to love those who, for whatever reason, are left parentless.

I can’t help but wonder the reason the children who reside in an upstairs room were left alone.

The special-needs room.

A place for the most innocent, forsaken, and isolated. I wonder who looked at their “imperfect” child and said no.

“Pure and undefiled religion before God and the Father is this: to visit orphans and widows in their trouble…”

My daughter went to up to one of the rooms, a little room within the larger special needs room where had gone yet.

In a crib, lying alone and shaking, a little boy came with a warning: “He’s abusive.”

She didn’t care.

And as she touched the trembling boy who was never touched, he stiffened and bristled.

As the power of her gentle touch went through him, he felt the warmth of something so primal, yet rarely experienced except for diaper changes and basic care.

Then he relaxed. As she told me this story, I pictured this fragile little boy breathing out and releasing the bondage of a life spent in a crib, unheld and lonesome – if only for a moment.

Photo credit: Joy Dodd

She went from child to child and touched the untouchable.

I think of Jesus touching the leper. Unafraid and only desiring to heal.

Compassion stronger than comfort.

In reaching out to a little boy with Down syndrome who was known to scratch and bite, she stood unwavering- maybe because God equipped her through her brother who often does the same.

And even as he spit in her face, she remained unmoved. Unshaken.

Because loving the different and misunderstood is messy.

“Hurting people hurt people” doesn’t just those who hurl insults or hit their spouses. Those with deep, inexpressible hurt longing to speak only to utter grunts often lash out in frustration.

So they are put into isolation.

The young men on the team brought down the bigger children who normally couldn’t because the “Tia’s” or aunts couldn’t lift them to watch skits, listen to teaching and just be with the other children.

Included and no longer isolated.

Young men and women held children for hours offering the comfort, power and promise of touch. Still I wonder who was touched more.

“If only I may touch His garment, I shall be made well.”

Healing power through a simple act we take for granted. Yet it can be everything to those who exist without it. Being the vessel through which mercy flows and rests on one small child.

And though my own ministry within my home- the very one who prepared my daughter- keeps me here, I can touch His garment through those who go.

And as difficult as it is for me in the natural to allow my own children to travel thousands of miles away, it is my sacrifice as they become Jesus to the neglected and lost.

“For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.”

“And the King will reply to them, ‘Truly I tell you, in so far as you did it for one of the least [in the estimation of men] of these My brethren, you did it for Me.’ ”

The least in the estimation of men. I can’t help think of my own son and those like him who society has deemed as “least”.

But to do for them is to do to Jesus Himself.

They are not least in His estimation.

The Message bible’s translation reads: “Then the King will say, ‘I’m telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.’ “

The overlooked and ignored.

The upstairs room.

The children who couldn’t come down.

The ones rarely held.

Done… unto Him.

My deepest desire is to do unto the One Who did it all for me. Doing as Him and being transformed into His likeness- heart by heart of those we touch.

Whether a nation far away, the grocery store, the workplace, the doctor’s office, a friend’s kitchen, a child’s bedroom, the walls called home –

My 16 year-old daughter boarded a plane (well, actually two) for Honduras today to go on her third mission’s trip.

In preparation for the trip, her youth mission team went on a weekend trip for team-building and visited a ministry in Atlanta called Bethel (an extension of Bethel in Redding, California).

Destination known only to parents and leaders, the team loaded a bus to the great the unknown. First arriving in Stone Mountain, they climbed the mountain and walked sky-ropes, conquering fears and learning to work as a team.

Later they learned of spiritual gifts and demonstrating God’s love to those around them. They learn to listen to His voice.

Then, these young people put words into action by “Treasure Hunting”. Treasure, by definition, is any thing or person greatly-valued or highly-prized.

The group gathers and prays for The Lord to reveal specific things then they ask to people if they can pray for them. Throwing off inhibitions and facing fear of rejection to fulfill God’s call.

Often they are turned down. Some might think they are those crazy Jesus-freaky, weird religious people.

But for those of us who know Him, Jesus Freak is kind of complementary. And oh, how I desire for people to understand that following Jesus is not religion. It’s so much more than rules and rituals. It’s showing His love.

When my daughter prayed she felt an impression of bright yellow but had no idea what this meant. A person in a yellow shirt? McDonald’s ? (Golden arches. I love teenagers and how they think.)

She was turned down several times. She became discouraged.

But then…

And elderly couple accepted her offer and the group prayed for this retired minister and his wife who was losing her memory.

And at the end, the gentleman pulled my daughter aside and asked her to keep his grandson in her prayers.

His grandson is 17 and doesn’t speak. He has autism.

And there it was. The open door. The not growing weary in well-doing.

With tears, she told this grandfather about her 12 year-old brother who didn’t speak and had autism and Down syndrome.

Then her friend told her to look down. As she stood on freshly-painted yellow lines at the entrance of Walmart, Jesus showed up in young people willing to be the hands and feet.

The group prayed for the man’s grandson.

Then, they began to pray and speak life over my son. My daughter’s little brother.

In a generation where death is spoken and mocking prevails, the compassion of the Father expressed through the sons and daughters brought hope.

What if my daughter had given up? What if she didn’t obey and told God it was just too hard and she was tired of rejection?

What if she worried more of what people thought than of what God thought?

“I have no greater joy than to hear that my children walk in truth.”

I’ve said of my son, we must love him than what others think of him.

We must love God more than what others think of us.

And obey him when it doesn’t seem to be “happening” for us.

I’ve been in that place lately, wondering if what I care so much about even matters. Growing weary in my well-doing and wondering is this of importance to anyone and most importantly- to the Lord.

How often are we so close and give up? How many don’t let Him in and miss it.

God loves those most weak and vulnerable. I must press on. I must not stop speaking for those who cannot speak for themselves.

“And let us not grow weary while doing good, for in due season we shall reap if we do not lose heart.”

For they are highly- prized. His treasure.

I must not lose heart for those who His heart loves.

I often refer to my children as my treasures. His children are His treasures. Greatly-valued and highly prized.

A slight blush shone through his little freckled cheeks and small tears hung in his blue eyes. His head hung a little low, and I knew what was coming.

“Mom, those kids were staring.”

His face couldn’t hide the mixture of embarrassment and self- ashamedness for being embarrassed by his older brother.

This kind of embarrassment only comes with having a stare-worthy brother.

As we parked for our end-of the-year celebratory lunch for Josh, I felt a twinge of angst. My eight-year old asked if we were taking the food home.

“Don’t you want to eat inside? What do you want to do? “I prodded and probed for his true “why” for asking and though he said it was fine to go in, but the truth was the proverbial elephant in the room.

The unspoken. The un-admittable.

Embarrassment. And shame for being embarrassed.

According to Wikipedia:

Embarrassment is an emotional state of intense discomfort with oneself, experienced upon having a socially unacceptable act or condition witnessed by or revealed to others.

Joshua’s condition is considered socially unacceptable by some.

And though he does not know it, those who love him do.

His brother doesn’t want to feel this way.

But he’s eight. And things are a big deal at eight.

So as I tried to explain that they may just be curious, and even if they weren’t we need to stand up for Josh and not worry about what others think, and people just don’t know what our lives are like and all the blah, blah, blah…

In my ramblings, I struggled between anger at those boys who were staring and my boy embarrassed about it and myself for feeling it sometimes myself.

I will clearly state that we not embarrassed by Joshua. We are not ashamed of him. Embarrassment creeps in rises up when those who do not understand him make us feel like he is less.

I needed to glimpse into my young son’s heart. As my own heart poured out sympathy and shared his pain so intensely, I felt Joshua’s pain unaware. My soul tore for each for different reasons.

“They think he’s weird. And that might mean they think I’m weird.”

“Well, I’m weird,” I said in some lame attempt to somehow make this whole “thing” better.

Then I told him that we needed to love Josh more than what people thought about him.

My oldest son, who often does with Josh what I cannot, had moments before pulled him out of the booth when he didn’t want to leave , put him in his car seat, then took him out of the van when we arrived home.

As we walked in, my soft-spoken and gentle son said to his youngest brother, “You know, I used to feel that way too.”

And I asked, “What changed your mind?”

He simply stated: “What you said.”

I can’t change people’s minds. I can’t know what they are thinking. I don’t know if they are curious or think my son is weird.

I don’t know if they are whispering prayers of thanksgiving that they don’t have a child like mine.

I could say I don’t care.

But I do. I hate the stares. I hate them for all of us.

I hate that we look at people through our eyes instead of God’s.

And as I told my son in eight-year old language, “God loves all of us the same. God loves Josh as much as he loves you. God loves the homeless man drunk and smelly on the street as much as he loves the man who lives in a mansion. We should all love each other like that. But unfortunately, people don’t.”

Later, we talked a little more and I asked him if he felt bad for being embarrassed and he said he was. Because he loves his brother.

But he said that people think Josh is stupid and they might think he’s stupid.

Today is the Spread the Word to End the Word day. A day of awareness to end the use of the “R” word” retarded, retard and any other forms of such, like ‘tard’. A day recognized as a day for change.

But I and many others live this day every day fighting against the use of a word.

A word once used as a diagnosis is now used as a term of insult and mocking.

No place is sacred. Not stores or schools or even church. Corridors and walls echo “That’s retarded “, “I’m so retarded,” “You look like a retard,” and the list goes on. The word invokes such creativity is seems.

From “My hair looks retarded,” (Statements like these are so grammatically incorrect and frankly ridiculous I won’t even waste my time to comment) to a Facebook meme referring to laughing like a retarded seal.

Just how is the seal retarded? He flaps his hands, like one with autism. Is that what is funny? Is this what makes the seal “retarded”?

I ashamedly and reluctantly admit I used to use the word before it became personal.

And I don’t really recall my thought processes as I so flippantly berated myself by mumbling, “I’m so retarded.”

How I wish someone had asked the questions so I would have realized how hurtful it was.

So I ask you who continue to use the word: What makes something “retarded”?

What makes someone or something sound “retarded”? Is it noises like those who cannot speak make?

My son makes that “retarded” noise when he opens his mouth and has so much in him to say but only a grunt will come out.

And I often tear up because he wants to speak so badly and I see the frustration swimming in the pools of his blue almond-eyes.

He acts “retarded” with his obsessive towel-twirling and uncoordinated movements and not being able to use the toilet on his own while having to rely on others to change his large pull-up type pants exposing him in ways that would mortify a typical almost-12 year-old.

But he cannot express his embarrassment. He must deal with it because we have to change him. He cannot tell me when he’s sick, or sad, or just plain in a bad mood.

He’s developmentally delayed.

Retarded.

Do you see my son when you say it?

Or do you see a young man in a wheelchair with his head slumped over with drool seeping from his mouth?

Do you see a little girl with almond-shaped eyes whose tongue might hang out a little when she gets tired?

Or do you see a teenager who talks a little like he has marbles in his mouth and is hard to understand?

Do you see an adult with her caregiver in Walmart who runs up to give you a hug?

Do you see my son when you say it?

I see my son when you say it.

And it breaks my heart.

Because I see a smile that can reduce me to a sobbing mess because the soul behind it is so pure.

Because I feel a chubby hand in mine and on my face and I hear a belly-laugh from a boy who sees angels.

You – the one who still uses the word: Do you realize that it cuts so incredibly deep because I know there is an unspoken idea that maybe you are so thankful you don’t have a “retarded” child?

Or think it will never happen to you.

I sure didn’t.

What about you who are politely asked to stop and yet simply refuse? Who tell me or my kids it’s just what you say and you aren’t going to stop?

Do you think I’m too sensitive?

What about you who tell me that I am and that it’s just what “everyone” says.

And that it’s not aimed at my son.

Does the “N” word offend you? It does me.

But if it’s not aimed at you or one of yours or even one of my friends, should it be okay?

Hardly.

We are to speak life and not death.

The “R” word speaks death because my heart dies a little every time I hear it used by someone in the halls of my church who I know also loves my son.

Death every time my children have to hear friends use it and being mocked for standing up against it.

Would Jesus say “retarded”?

Would He fight so hard for His “freedom of speech” and right to say it?

He came to heal the brokenhearted. He spoke life and love and honor.

The “R” word speaks death and hate and disrespect.

Yet I’ve been told so much to the contrary.

I’ve been told that because the word simply means “slow” I shouldn’t be upset by it.

But is that really what someone means when by using the word? What image do you see?

I see my son who would smile and touch your hand even if you called him that vile, horrid word to his face.

Maybe he’s too “retarded” to know better.

Maybe He is like Jesus and forgives them because they know not what they do.

Maybe he knows his mommy will not stop speaking out for him because he cannot.